My myeloma numbers had spiked yet again this month and my oncologist wanted to add Cytoxan or Revlimid to the Velcade, as the Velcade is no longer working. I refused, which is my decision since it is my body.
Instead, I have started low dose naltrexone, which my pain doctor ordered for my pain, and he said it would help my immune system. I have done a lot of research done by many doctors with very good results using low dose naltrexone to help bring about remission in many forms of cancer. I truly feel God is leading me in this direction and this journey for me has been as much a spiritual journey as a physical one. I am giving God control of my life and, should He lead me back to chemo, I would go there, but that is not where I truly feel He is leading me.
I know most of you here are only interested in the drug side of battling cancer, so I will probably not be back, but I wish you all the best and ask that God will bless each of you with healing.
sue in ohio
Forums
Re: No more chemo for me
Hi Sue in Ohio,
I looked up 'naltrexone' in Wikipedia (link) and it is also a drug, although not classified as chemotherapy. It is used to counteract opioid dependence, and more too, but I did not read anywhere about it helping the immune system. (I like Wikipedia's readable explanations on all sorts of topics.)
I don't understand why you would value the opinion of a doctor treating pain above the opinion of an oncologist. Could you not consult and take direction from both doctors? I know from personal experience that uncontrolled myeloma is a terrible disease, having had bones made so weak that they fractured spontaneously. I was so grateful to take the chemotherapies that put me into a remission.
I am no longer in a remission, but the Revlimid plus dexamethasone I am now taking is keeping my M protein numbers under control. So far, I have been treated with Velcade, a stem cell transplant, and Revlimid, as well as a bone building medication, Aredia. The Velcade and Revlimid do have side effects, but the alternative is so awful that I would put up with quite a lot to have my myeloma managed.
Thanks for your asking God to bless us. That is very nice of you, and hope that you also can manage your myeloma to become healthier.
I looked up 'naltrexone' in Wikipedia (link) and it is also a drug, although not classified as chemotherapy. It is used to counteract opioid dependence, and more too, but I did not read anywhere about it helping the immune system. (I like Wikipedia's readable explanations on all sorts of topics.)
I don't understand why you would value the opinion of a doctor treating pain above the opinion of an oncologist. Could you not consult and take direction from both doctors? I know from personal experience that uncontrolled myeloma is a terrible disease, having had bones made so weak that they fractured spontaneously. I was so grateful to take the chemotherapies that put me into a remission.
I am no longer in a remission, but the Revlimid plus dexamethasone I am now taking is keeping my M protein numbers under control. So far, I have been treated with Velcade, a stem cell transplant, and Revlimid, as well as a bone building medication, Aredia. The Velcade and Revlimid do have side effects, but the alternative is so awful that I would put up with quite a lot to have my myeloma managed.
Thanks for your asking God to bless us. That is very nice of you, and hope that you also can manage your myeloma to become healthier.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: No more chemo for me
Nancy,
My pain doctor admitted he knows nothing about the use of low-dose naltrexone for the treatment of cancer. He gave it to me for my fibromyalgia. I learned about its use for cancer remission through research. The best explanation of how it works in cancer is written by Dr. David Gluck. I have watched videos and read about people who have had remissions from several kinds of cancer using low dose naltrexone.
I do trust my oncologist, but most conventional medicine doctors know little about alternative treatments such as these because no drug company is willing to invest millions to test a medication that is this cheap. They do not care about whether we live or die, all they care about is making their money.
My bones are in good shape, as are my kidneys. I feel good and I exercise daily. For one full year I never got ill even once till this November, when my immune system tanked and even the oncologist said that chemo is hard on the immune system.
This is my personal journey of faith for I truly believe that God is leading me the route I am taking and I trust Him more than any doctor or any medication. I will not judge your choice to take all of these drugs and I ask you not to judge my following a different path. I did not take this step lightly or without extensive prayer and research.
I will continue to get my blood work checked monthly by my oncologist and will continue to see him. He said that, down the line, he may add back in the Velcade and prednisone if things improve. I will post occasionally about my progress based on my blood work. If God leads me to a different path, I will obey. For me it is about who I trust -- God, or man -- and the answer is God.
sue in ohio
My pain doctor admitted he knows nothing about the use of low-dose naltrexone for the treatment of cancer. He gave it to me for my fibromyalgia. I learned about its use for cancer remission through research. The best explanation of how it works in cancer is written by Dr. David Gluck. I have watched videos and read about people who have had remissions from several kinds of cancer using low dose naltrexone.
I do trust my oncologist, but most conventional medicine doctors know little about alternative treatments such as these because no drug company is willing to invest millions to test a medication that is this cheap. They do not care about whether we live or die, all they care about is making their money.
My bones are in good shape, as are my kidneys. I feel good and I exercise daily. For one full year I never got ill even once till this November, when my immune system tanked and even the oncologist said that chemo is hard on the immune system.
This is my personal journey of faith for I truly believe that God is leading me the route I am taking and I trust Him more than any doctor or any medication. I will not judge your choice to take all of these drugs and I ask you not to judge my following a different path. I did not take this step lightly or without extensive prayer and research.
I will continue to get my blood work checked monthly by my oncologist and will continue to see him. He said that, down the line, he may add back in the Velcade and prednisone if things improve. I will post occasionally about my progress based on my blood work. If God leads me to a different path, I will obey. For me it is about who I trust -- God, or man -- and the answer is God.
sue in ohio
Re: No more chemo for me
Sue in Ohio,
This is a website for people to discuss various treatments and issues related to multiple myeloma.
If you want to discuss your treatment as it relates to your belief in God and him leading you down a certain path, there are probably better websites for that discussion. I certainly didn't come to this website to discuss my belief in God.
If you choose to ignore all the best medical advice as it relates to treatment, that is your choice, but please don't knock those of us that do rely on it. Also, I prefer to rely on proven treatments instead of rolling the dice on unproven alternative treatments. You say you aren't judging us for "taking all these drugs," but it sure sounded like it to me.
This is a website for people to discuss various treatments and issues related to multiple myeloma.
If you want to discuss your treatment as it relates to your belief in God and him leading you down a certain path, there are probably better websites for that discussion. I certainly didn't come to this website to discuss my belief in God.
If you choose to ignore all the best medical advice as it relates to treatment, that is your choice, but please don't knock those of us that do rely on it. Also, I prefer to rely on proven treatments instead of rolling the dice on unproven alternative treatments. You say you aren't judging us for "taking all these drugs," but it sure sounded like it to me.
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: No more chemo for me
Sue, I am reassured to know that you will stay in touch with your oncologist and get your blood tests done. Myeloma just scares me silly sometimes, and I would not divert from the wisdom of my hematological oncologist and his team. But of course it is up to the patient as to what they decide to do. If things get worse, you have not burned any bridges I guess!
I did not know I had myeloma until I was already in Stage 3, and I didn't feel I had the luxury of choice to wait and see what would happen with me. As I have said many times, I am so grateful for the treatments given that gave me my life back!
Best to you, and, Dallas, I agree that the Beacon is mostly for us to discuss various treatments and issues related to multiple myeloma, although it's human nature to get side-tracked sometimes, nest-ce pas? Sue has a strong spiritual side I think.
I did not know I had myeloma until I was already in Stage 3, and I didn't feel I had the luxury of choice to wait and see what would happen with me. As I have said many times, I am so grateful for the treatments given that gave me my life back!
Best to you, and, Dallas, I agree that the Beacon is mostly for us to discuss various treatments and issues related to multiple myeloma, although it's human nature to get side-tracked sometimes, nest-ce pas? Sue has a strong spiritual side I think.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: No more chemo for me
While I may not agree with Sue's choices, I believe it is her right to proceed as she wishes.
After all, no treatment .... is a treatment decision.
I have also seen reference to the anti-myelomic effects of Naltrexone---although I personally believe it to be anecdotal at this point. Ditto Curcumin.
I've got a guy ( non-myelomer) hounding me to take Reservatrol, etc. Supplements. The only study with Reservatrol was quickly dQ'd due to safety concerns. ( Kidney damage)
His fall back--the Big Pharma killed the study.
A Nasty Pharmacist behind every tree......? Where is Maxwell Smart, when you need him ? 86 ?
To each their own.
May you be happy, whatever you choose.
After all, no treatment .... is a treatment decision.
I have also seen reference to the anti-myelomic effects of Naltrexone---although I personally believe it to be anecdotal at this point. Ditto Curcumin.
I've got a guy ( non-myelomer) hounding me to take Reservatrol, etc. Supplements. The only study with Reservatrol was quickly dQ'd due to safety concerns. ( Kidney damage)
His fall back--the Big Pharma killed the study.
A Nasty Pharmacist behind every tree......? Where is Maxwell Smart, when you need him ? 86 ?
To each their own.
May you be happy, whatever you choose.
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Rneb
Re: No more chemo for me
Hi,
I saw the reference to low-dose naltrexone (LDN). I have been taking this faithfully since the fall of 2012. I am in complete remission. However, I also had a stem cell transplant in 2012, and I'm on RVD (Revlimid, Velcade, and dex) for maintenance therapy. I feel like the chemo did its job and the LDN is a supplement.
I may be off of the Revlimid after another few months, but I'm not sure what the doctor will keep me on - maybe just the Velcade and dex? I will continue to take the LDN and other supplements, and will continue to trust God for continued healing.
My best to you all.
I saw the reference to low-dose naltrexone (LDN). I have been taking this faithfully since the fall of 2012. I am in complete remission. However, I also had a stem cell transplant in 2012, and I'm on RVD (Revlimid, Velcade, and dex) for maintenance therapy. I feel like the chemo did its job and the LDN is a supplement.
I may be off of the Revlimid after another few months, but I'm not sure what the doctor will keep me on - maybe just the Velcade and dex? I will continue to take the LDN and other supplements, and will continue to trust God for continued healing.
My best to you all.
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SC Sallie
Re: No more chemo for me
Everybody is free to make their own decisions. But my view is God is all powerful, and if God did not want me to have myeloma, He would not need me to take naltrexone or any other drug to rid me of it -- it would just happen. If God did not want me to have myeloma, I would not have gotten it in the first place, and I do not see why God would change His mind about it.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: No more chemo for me
Hi Sue,
Good luck with the "alternative" treatment. I'm very interested in hearing about both conventional and "alternative / complementary" treatments via the forum. Different things can be effective for different people, and we well know that there is a move toward very tailored treatment for multiple myeloma in its various forms.
Like Nancy, I was diagnosed at Stage3 / 4 when four vetebrae broke spontaneously. In fact, I was more or less unconscious in hospital for a week whilst they sorted out what was going on, and treatment for multiple myeloma had started by the time I "woke up". MRI showed multiple lytic lesions throughout my entire skeletal system, and having my bones spontaneously breaking again is a terrifying thought.
Prior to the multiple myeloma, I had always thought that I wouldn't go anywhere near conventional medical interventions for cancer, but I pretty much ended up with no choice. Plus, my experience and the incredible knowledge and care of my specialist and other medical staff now finds me entrenched in the medical system and grateful to be there.
This hasn't stopped me trying or using other "stuff" alongside my regular treatment. For example, when first diagnosed, I found the regular use of Bach flower remedies worked well for me, and my specialist was okay with it.
Good luck with the "alternative" treatment. I'm very interested in hearing about both conventional and "alternative / complementary" treatments via the forum. Different things can be effective for different people, and we well know that there is a move toward very tailored treatment for multiple myeloma in its various forms.
Like Nancy, I was diagnosed at Stage3 / 4 when four vetebrae broke spontaneously. In fact, I was more or less unconscious in hospital for a week whilst they sorted out what was going on, and treatment for multiple myeloma had started by the time I "woke up". MRI showed multiple lytic lesions throughout my entire skeletal system, and having my bones spontaneously breaking again is a terrifying thought.
Prior to the multiple myeloma, I had always thought that I wouldn't go anywhere near conventional medical interventions for cancer, but I pretty much ended up with no choice. Plus, my experience and the incredible knowledge and care of my specialist and other medical staff now finds me entrenched in the medical system and grateful to be there.
This hasn't stopped me trying or using other "stuff" alongside my regular treatment. For example, when first diagnosed, I found the regular use of Bach flower remedies worked well for me, and my specialist was okay with it.
-
kefrewin - Name: Karen Frewin NZ
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2009
- Age at diagnosis: 53
Re: No more chemo for me
I wish you well on your current treatment strategy.
My concern with posts like this is that they may be misleading people into thinking that this may be the right path for them also. I don't know your story, or why you are choosing this drug over others. What I do know and trust is that these proven treatments for multiple myeloma saved my husband's physical and mental health. I would hate for someone to miss the chance to live a better life by being mislead into thinking that an unproven treatment will help them too.
I think it's great when people can lean on God to help them get thru a difficult time in life. But I have trouble understanding that anyone would think that God wants them to shun proven medical treatment in favor of something that likely won't help. If we believe that God is all powerful, should we not believe he put these highly skilled doctors in our life to help us? People tend to attribute many things to God that almost leaves me with a vision of God just shaking his head.
Good luck on you journey.
My concern with posts like this is that they may be misleading people into thinking that this may be the right path for them also. I don't know your story, or why you are choosing this drug over others. What I do know and trust is that these proven treatments for multiple myeloma saved my husband's physical and mental health. I would hate for someone to miss the chance to live a better life by being mislead into thinking that an unproven treatment will help them too.
I think it's great when people can lean on God to help them get thru a difficult time in life. But I have trouble understanding that anyone would think that God wants them to shun proven medical treatment in favor of something that likely won't help. If we believe that God is all powerful, should we not believe he put these highly skilled doctors in our life to help us? People tend to attribute many things to God that almost leaves me with a vision of God just shaking his head.
Good luck on you journey.
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